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  • relapes with little recovery/new symptoms any advise

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    Old 12-27-2007, 03:09 AM   #1
    peace40
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    relapes with little recovery/new symptoms any advise

    Its been a while since I have been on the message board. I had a relapes in August which caused change in walking gait (now using a cane for walking). Lots of strange sensations in legs, arms torso such as tingling, pins needles, achy, burning and vibration sensations. I am now having spasms/ twitching in legs and torso (mostly legs). These symptoms usally come in waves but can linger also. In past few days I have been getting odd sensation/almost painful in my hands when I take a deep breath (really odd). This can happen at other times such as when I move. Just wanting to know if anyone has experenced this? I guess overall I am feeling depressed as I have not had full recovery since relapes. I had IV steriods in August but now feel like I am living in someone else's body. I am on so much medication now, started meds for neuropathic pain (neurontin). Just started so not sure how I will go. Happy to hear from anyone who has tried this drug and the results. My one question has become several. Guess I am just down as I feel this disease is taking a hold at the moment. Any advise... Oh currently seeing neuro every 2 months as things have not settled as yet, although next appointment is in March. My neuro e-mails me between appointments for updates on how I am going.

     
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    Old 12-27-2007, 04:22 AM   #2
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    Re: relapes with little recovery/new symptoms any advise

    Hello Peace.

    It sounds like you have a wonderful neuro.

    Gait problems can be difficult to deal with but not impossible. Unfortunately, gait can take time and effort to get it back, if possible. Have you started working with a Physical Therapist (PT) yet? If not talk to your neuro, PT can be helpful for many.

    Sensations: burning, tingling, vibrations and pins and needles are sensory symptoms but might be helped with meds. Sensory symptoms can be very difficult to treat. Those symptoms that do not cause you pain, just try to ignore, they're really nothing to stress over.

    The spasms and twitching might be helped by Neurontin but if not there sre othe meds that can help.

    I don't have any experience with Neurontin but I hope it helps with your pain.

    Relapses can last months even with steroids. Sometimes steroids help and sometime they don't.

    The strange thing about MS: you can be on different meds for different symptoms and then one day you notice the symptoms are gone. You talk to your neuro about decreasing your meds and find you don't need the meds any long - it does happen, not for everyone but for some.

    Your relapse and the symptoms involved might need more time to resolve but it's also not uncommon to have residual symptoms.

    I wish you all the best and please speak to your neuro about your emotional state.

    Last edited by Snoopy61; 12-27-2007 at 07:50 AM.

     
    Old 12-27-2007, 05:06 AM   #3
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    Re: relapes with little recovery/new symptoms any advise

    I can help on the Neurontin. First things, it takes a couple of weeks to level off and feel normal. I almost quit taking them at first as my body went very quickly into a craving for it. Well, it stops and now I can't even tell I am on it, however the best thing it does for me is helps me sleep. I fall into a very deep sleep from five to six hours every night. I did not realize how often I was waking up from the symptoms until going on Neurontin. Now, I don't need much more sleep than this. And I find I am not as groggy during the day as I used to be.

    The initial side effects I remember were a very dry throat, constipation, and a little bit of light headedness. I started at a low dose of 100mg three times a day (but I weigh just over 100 pounds). I then switched to 300 just before bedtime and then to 300 twice a day. Each time, my body had to adjust to the change, but after about two weeks, I seemed back to normal. Except for the wonderful rest I am receiving.

    Hope this helps.

     
    Old 12-27-2007, 09:30 AM   #4
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    Re: relapes with little recovery/new symptoms any advise

    Kudos and blessings for a proactive neuro! They are well deserving of a "good on'ya"
    I do not do meds, but relapses can extend for quite some time even with meds. Your neuro could be concerned with your MS type. Each type has a fairly easily defined recovery-flare-up cycle. I wish you the best- try to stay positive because you are never alone.

     
    Old 12-27-2007, 10:36 AM   #5
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    Re: relapes with little recovery/new symptoms any advise

    Before my dx I was plagued with leg twitches so bad I kicked out like a horse. It was put down to pressure on a spinal nerve and I was put on neurontin. Thank heavens! I think my final dosage was 400 mg 3x/day. I finally was sleeping thru the night. The spasms largely went away after back surgery, and were much milder, so I think at least some of it really was a spinal nerve. But they are back, mostly at night, so I'm on valium (10 mg at bedtime). This is certainly MS related.

    The only bad thing about neurontin is getting off it. Must be done gradually, and you will have wild twitches for a day or 2. But it was a lifesave for me for a couple of years.

     
    Old 12-27-2007, 12:12 PM   #6
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    Re: relapes with little recovery/new symptoms any advise

    Thank you all for yours words of wisdom. I agree that I have a great neuro as I know some do not have positive experences. I guess I will just have to ride things out and take one day at a time. Oh and yes I did see a neuro physio who I just fisished with as she felt the diease was still active and we were not getting anymore recovery at that stage. Hope you all had a Happy Christmas. Again thanks as I ran to the computer this morning to see my replies and feel comfort knowing others with MS are there to assist.

     
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